ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: ROCKYB on April 20, 2008, 01:03:00 pm
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I have researched all my options and feel Radiation is the best choice. Yet some people I speak with say I am young 40 I should go with surgery. Tell me why you pick Gamma or Cyber over surgery and are you worried about the risk later in life thank you for your feedback
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Hi Rocky,
I posted earlier (can't remember where in all the messages - aargh!) in response to someone who was being guided to surgery because of young age. I had done a Google search for "gamma knife cancer" and it had resulted in all the CURES FOR CANCER gamma knife was being used for, NOT the threat of future problems. I thought that said alot. As I said then, I don't think a fear of cancer in the future is any reason to pick surgery over radiation.
Personally, I have had quite a bit of experience among family members (mother and late husband) with brain surgery. In all cases, surgery was the only option,and I'm not against surgery. HOWEVER I have seen what a powerful effect brain surgery has on the body, and personally would never choose surgery if I had a choice.
I had a choice, and chose Gamma Knife. I'm not young (58), so the 'future fear' was not an issue. But I sincerely think that even if I were younger, I would choose radiation. There are potential risks with either, but the Gamma Knife for most people, I believe, is much more easily handled by the body. I had mine last July.
Let me know if you want more specifics....
Take care,
Dana
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Rocky
I chose surgery because I was closing in on 60 and I knew I would be soon dealing with a bunch of other old age medical stuff and I didn't want a recurring tumor to be one of them. I just wanted it to be gone. In addition, I was for all practical purposes SSD so the surgery option and losing the rest of the little hearing I had, meant very little. I have had balance and facial muscle nerve issues and there is the temptation to second-guess myself -- but the thing is gone.
David
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Hi Rocky,
My reasons for doing radiation? I wanted to preserve the remaining hearing in my left ear; nothing about having my head cut open sounded good; the control rate is as good as surgery; the hearing preservation rate is better; the facial nerve issue rate is lower; the rate of cancer from AN radiation is lower than the rate of death from AN surgery.
A lot depends on the circumstances of your own AN, and your own gut feeling about having radiation versus having brain surgery. I think the age issue is a red herring; there simply aren't enough cases of anything weird happening to justify raising it.
Steve
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I found out I had a 7mm AN in 2006. I was told by a local ENT that I was too young for radiosurgery, and that I should definitely have surgery. I started doing research at pubmed.gov, which is a reference index for peer-reviewed publications of doctors writing to doctors. The reading I did convinced me that radiosurgery was the safest choice for me, both in the short and in the long run. One of the most decisive articles I found happened to be by a doctor who was in my HMO network (Dr. Friedman at Shands, U. of Florida) in the Journal of Neurosurgery, 2006. What I found particularly persuasive was that Friedman’s conclusions were supported by the editor of the journal, Dr. Sheehan of U.Va. I’m an academic, so these are the sort of pedigrees that matter to me.
I will paste in here Friedman’s response to Sheehan’s editorial commentary: “We agree completely with Dr. Sheehan’s thoughtful comments about radiosurgery for VSs. Based on extensive experience with surgery and radiosurgery for these tumors, we believe that radiosurgery is the treatment of choice for small tumors (<3 cm). We make this assertion because the long-term tumor control rates (90% of tumors were unchanged or smaller; 99% required no further surgical intervention during the follow up) and the cranial nerve morbidity rates (0.7% with doses used since 1994) greatly exceed the published results of even the most experienced surgeons. The issue of malignant tumorigenesis has recently been the subject of much discussion. It probably exists but at a frequency tremendously lower than the risk of a serious complication from open surgery. Let’s use our hard-won microsurgical skills on larger tumors and accept the facts about radiosurgery discussed in our paper and many others.�
I took this material to my Primary Care Physician at the HMO, and although he respects the local ENT, it only took him about five minutes of reading before he said, “This [radiosurgery] is what I would do.â€? And I didâ€â€with Friedman at Shands. All is well so farâ€â€no change in hearing, no other symptoms.
And here’s a scary thing that Dr. Sheehan wrote in his editorial (this is doctors writing to doctors): “As any intracranial surgeon will attest, these three approaches [retrosigmoid, translabyrinthine, middle fossa] are attractive not only because of the possibility of a cure through gross-total resection of the tumor but also as a result of the sheer beauty of the neuroanatomy encountered and the technical challenges they present.�
I don’t want someone cutting my head open because it looks really cool in there.
Mac
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Ditto to what Steve said, only my AN is on the right side. ;)
For what it's worth, I was 42 when treated.
JB
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Mac,
Thank you for posting that. I remember reading that once, and could not find it when I went to look for it again. I'm glad to learn that I didn't imagine it. Here is a link to the commentary by Sheehan, and the response by Friedman (the article itself is also at this site): http://thejns.org/doi/full/10.3171/jns.2006.105.5.655
I liked Sheehan's opening line; I think everyone on the forum can relate to his sentiment, even if the wording is all medicalese: "There may be no other intracranial neuropathological entity whose proper treatment arouses as much controversy as vestibular schwannoma."
I haven't heretofore referred to my AN as an "intracranial neuropathological entity", but perhaps I shall henceforth. :D
Steve
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And here’s a scary thing that Dr. Sheehan wrote in his editorial (this is doctors writing to doctors): “As any intracranial surgeon will attest, these three approaches [retrosigmoid, translabyrinthine, middle fossa] are attractive not only because of the possibility of a cure through gross-total resection of the tumor but also as a result of the sheer beauty of the neuroanatomy encountered and the technical challenges they present.�
I don’t want someone cutting my head open because it looks really cool in there.
Mac
Reading Mac's recollection of his experience and this quote from Dr. Sheehan brought back some memories for me. Dr. Shuer at Stanford who at the time was chief of neurosurgery and ultimately steered me to Dr. Chang made a very similar comment to me. I don't remember the exact quote, but the essence was: "neurosurgeons really enjoy AN surgery because it is a technically challenging procedure with very little chance of mortality since the patients are typically very healthy otherwise. Sometimes recommendations for surgery are more reflective of this aspect rather than what will be the best outcome for the patient". I tend to think that mind set may be out there in some surgeons and reinforces the need for patients to make the effort to understand the outcome probabilities for each option before making a decision.
Mark
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What Steve said, also ditto for me.
And,I do respect LADavid and his decision, but having surgery does not necessarily guarantee that a tumor will not have regrowth. All it takes is one little cell to start over again. And also, there are many who have microsurgery to "debulk" most of the tumor, and then finish off the little bugger with radiosurgery. A nice little one-two punch!
And as for my "intracranial neuropathological entity" ( :D ), it's been kicked to the curb, so to speak. And that's a good thing!
Which ever way is best for you....Thank God for modern medicine, right?
Sue in Vancouver USA
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I want to thanks all of you for your feedback this entire process has been very hard on me and my family. Thank god for good people like you who are willing to share there experiences. I hope to do the same when I take care of this.
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I was treated with radiation via LINAC four years ago when I was 36 yo. My only symptom/problem was dizziness (constant for 7 weeks then intermittent, and only very little since treatment). Since I had all my hearing and I know that I don't respond well to anesthesia and I had a couple of doctors who did both surgery and radiation suggest radiation as my better bet I came to the right choice for me. I asked myself - If in 5 years, 10 years, 15 years down the road I end up with a malignancy will I regret my decision? When I could answer "No" I knew I'd made the right decision.
I'm 4 years out from treatment and my doctor considers my treatment a success and I've had no residual problems I virtually never think about my AN anymore.
Good luck,
Elizabeth
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Hi RockyB,
I was all set to have surgery until my second visit to the Neurosurgeon who told me I would definately lose my hearing in my right ear AND would have facial paralysis, but just "temporarily". I hadn't even considered GK until then, but then researched it until it led me to Dr. Noren. As soon as I got an appointment, I drove from Maine to Rhode Island for a consult. I found out that I could retain my hearing (which I pretty much have), and there was only a very very small chance of paralysis. So far, so good! I am very happy with my decision.
Best of luck to you!
Lisa
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Hello,
There is a very good discussion of surgery vs. radiation and age (my son is 23) in the "Inquiries" section "mother of 23-year-old..." Our son has had surgery recommended by Dr. Brackman at House Institute, and we are seeing Dr. Chang about cyber knife at Stanford this Friday. I've been convinced that age is not an issue; we'll see how my son feels after meeting with Dr. Chang.
Katherine
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Hi Rocky,
I'm 47 and in my mind, that is still young. Well, today it feels young anyway. Just depends on the day. I chose radiation over surgery for many reasons. I have a history of grand mal seizures and didn't want anyone manipulating my brain at all (middle fossa was recommended). My hearing was minimally affected. The risk of post procedure complications appeared much less with radiation, especially because my tumor was small. I didn't want to take a risk on possible post operative infection. I was very concerned about possible facial nerve damage having the effect of making future employment more difficult (I know this may not be a valid concern but some may view this visible problem as an increased insurance risk). And as far as being concerned over the possibility of cancer in the future, for some reason that just didn't affect my decision. This may be an odd way of viewing it, but if I had undergone surgery only to be told I would also need radiation due to residual tumor, I would just as soon have just chosen radiation to begin with. However, I completely understand why one would chose surgery. Being a nurse, this was my first experience with so many treatment options for a given condition. I can honestly say that this was probably the toughest decision I've ever had to make because I knew it would not only affect me, but also my family. And so far, it's been 3 months and all is well. Just a mild decrease in hearing, some increased tinnitus and more clumsy.
Good luck and keep us all updated.
Sandra
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Hello,
There is a very good discussion of surgery vs. radiation and age (my son is 23) in the "Inquiries" section "mother of 23-year-old..." Our son has had surgery recommended by Dr. Brackman at House Institute, and we are seeing Dr. Chang about cyber knife at Stanford this Friday. I've been convinced that age is not an issue; we'll see how my son feels after meeting with Dr. Chang.
Katherine
I am send my info to Dr Chang tell me what you think when you come back thanks.
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Rocky,
I meant to add that in the scope of things, my symptoms were minimal. What led me to act was when the second MRI showed more than the typical growth expected. Had the tumor been larger to begin with and with more symptoms, I'm not quite sure what I would have done. I'm blessed that mine was caught early on and when small. I just hope ET dies from the CK. Only time will tell.
Good luck
Sandra